Thanks for signing up! You might also like these other newsletters:

Doug Ankerman and Ardra Shephard both have SPMS, but the onset of this stage of MS was different for each.

Photos Courtesy of Doug Ankerman and Ardra Shephard

If you’ve been recently diagnosed with multiple sclerosis (MS), chances are you have the relapsing-remitting form of the disease (often abbreviated as RRMS). This form of MS is characterized by periods of worsened symptoms — known as relapses — that develop over days or weeks, and usually subside partially or completely.

MS relapses are usually followed by periods of remission, or “quiet periods,” that can last for months or even years.

In most people with RRMS, this pattern of relapses and remission eventually changes into a steady progression of symptoms, known as secondary-progressive MS (SPMS). This happens about 60 to 70 percent of the time, according to the Mayo Clinic.

For many people with MS, the word “progression” has scary connotations — conjuring up images of a rapid, debilitating decline in neurological function. And, in fact, this is how some people experience secondary-progressive MS.

But for many others, the worsening of symptoms that comes with secondary-progressive MS is manageable, and doesn’t necessarily have a dramatic impact on their quality of life.

Here’s an overview of what happens in secondary-progressive MS, and what you might experience if you develop it:

A Symptom-Based Diagnosis

Like other forms of MS — including relapsing-remitting MS and primary-progressive MS, in which symptoms worsen right away without relapses — secondary-progressive MS is defined by a pattern of symptoms, rather than by diagnostic tests.

“There’s no MRI [magnetic resonance imaging] or blood test that we use to help diagnose secondary-progressive MS. It’s the patient’s disease course,” says Jai S. Perumal, MD, an assistant professor of neurology at Weill Cornell Medicine in New York City and director of the MS center at Montefiore Nyack Hospital in Nyack, New York.

The most common early indicators of secondary-progressive MS, Dr. Perumal says, are progressive problems with gait (walking), or loss of stamina, or difficulty with cognition.

“Things are kind of creeping in, and they’re there to stay,” she says. “They don’t come in all of a sudden, the way a relapse happens.”

This gradual onset of symptoms means that it can be difficult to pinpoint when, exactly, secondary-progressive MS begins. Perumal notes that if a doctor has been seeing a patient for some time, it may be easier to notice when symptoms begin to worsen subtly — but any doctor can listen to a patient’s perception of how symptoms have changed over the years.

There’s no usual point in time when secondary-progressive MS begins, says Perumal, but it often comes sooner in people with aggressive disease — meaning that they experience severe symptoms during relapses, or have them more often.

In contrast, if someone has mild disease, “You may not even notice the transition that much,” says Perumal — and, in fact, people with milder MS can be stable for years without relapses or significant worsening of symptoms.

But Perumal cautions against complacency during periods of symptom stability. “Things will still be happening on the MRI,” she says. “Every lesion doesn’t translate into symptoms.” This means that it’s still important to continue with your prescribed treatment.

For Ardra: A Blurry Transition From RRMS to SPMS

The transition from relapsing-remitting to secondary-progressive MS has been blurry for Ardra Shephard, a resident of Toronto, Canada, who was diagnosed with MS a few years ago, in her early twenties. She comments on living with MS in her blog, Tripping on Air.

“It’s not like they give you some kind of certificate,” she says. “It’s more of an observation you can only make after the fact.”

For Shephard, early MS symptoms included vision loss, hearing loss, numbness, and paralysis — dramatic changes that would come on suddenly during relapses. It took weeks or even months to recover from these attacks, after which she still wasn’t quite “normal.”

“Every time there was a new attack, I’d be left with a little more damage,” she says. This included vision that mostly returned, but not to the point where she could drive a car, and walking that seemed normal until she hit a certain distance, after which her foot would start to drop.

After a certain amount of time, “You look and see that you’re not having the same kind of relapses, there are no new MRI lesions, but there are certain symptoms that are gradually getting worse,” Shephard says of her gradual change to secondary-progressive MS.

For Doug: A Steady Decline From Day One

The onset of secondary-progressive MS was very different for Doug Ankerman, an Ohio resident who was diagnosed with MS in 1996 and worked as a broadcast advertising copywriter until 2009. A former stand-up comedian, he tries to inject humor into his MS experiences in his blog, My Odd Sock.

“I’ve been on a steady decline, I think, since pretty much day one,” Ankerman says, even though he’s been told that he seems to have secondary-progressive — rather than primary-progressive — MS.

Ankerman experiences problems with his gait as well as spasticity, for which he takes the drug baclofen every day and receives Botox (onabotulinumtoxinA) injections in his legs every three months. He’s been on and off disease-modifying drugs for MS over the years, and has seen his symptoms worsen regardless of what, if anything, he was taking.

In addition to seeing his progression in timed walking tests at his doctor’s office, “I can tell it in my everyday life with my balance,” he says. “Some days, I have to stop walking up and down my driveway. I think, ‘Gee, I could do this six months ago.’”

Developing Treatment Strategies for SPMS

The disease mechanism underlying the change from relapsing-remitting to secondary-progressive MS isn’t well understood, according to Perumal.

In relapsing-remitting MS, it appears that circulating inflammatory cells cross the blood-brain barrier and attack neurons, leading to lesions and relapses. Perumal notes that according to the latest research, secondary-progressive MS may result from inflammatory cells that have settled in the brain, or from the loss of neurons over time.

“If they took a lot of hits early on in the disease, that kind of neuronal loss is going to be more pronounced,” she says.

Right now, there aren’t any effective treatments to repair or replace damaged or lost neurons in MS. This means it’s especially important to try to control the disease in its earlier stages, when the currently available drugs are most effective, Perumal says.

“If we preserve neurons or prevent them from getting under these repeated attacks, then maybe when patients hit the secondary-progressive stage, it’s not going to be as bad as it could have been,” she says.

Once a person is firmly in the secondary-progressive stage, it’s standard practice to continue their MS treatments and to switch to a more aggressive therapy if symptoms get worse, Perumal says. This might help limit new inflammation or lesions, but it won’t reverse long-standing damage or the associated symptoms.

Symptoms Are Treatable, Even When Underlying Disease Isn’t

But that doesn’t mean you have to accept living with all your symptoms, Perumal emphasizes. “There are many medications that help with gait, that help spasticity, that help with bladder symptoms,” she says. “You should still talk to your doctor about your symptoms.”

To make the most of appointments when you have secondary-progressive MS, Perumal recommends making a list of topics to discuss, starting with symptoms that are bothering you the most.

This is a nod to the reality that treating symptoms of MS, rather than the underlying disease, involves a piecemeal approach.

When someone has multiple symptoms, “We can’t do something for all of these things at one visit,” Perumal notes. “It’s trial and error, and it’s a step-by-step process.”